Wednesday, March 16, 2016

According to the CDC (2015)
one in six children aged 3-17 have one or more developmental
disabilities that result from an impairment affecting physical and
cognitive skills, learning ability, language skills, or behaviors.
Common disabilities include intellectual disabilities, cerebral palsy,
autism, Downs’s syndrome, and disabilities by other names.

Parents of disabled children
learn to respond to behaviors, juggle hectic therapy schedules,
experience financial challenges, discrimination, and many times long
waiting lists to be accepted for community services or to process social
security disability or Medicaid applications. Many couples divorce as a
result of the stress of the situation. Many lose friends who are unable
to understand the challenges of the day to day situation of raising a
developmentally disabled child.

While we hear about caregivers
of the sick, the elderly, and the older who are disabled, we rarely
hear about caregivers of developmentally disabled children. Why? Because
raising children comes with having children—and children are expected
to have a long life ahead of them. The elderly are more often a topic of
conversation because at end of life they represent a greater cost to
the healthcare system and the benefits of extending their lives are
debatable.

One aspect in common to most, if not all caregiving situations, is
the aspect of guilt. Parents raising developmentally disabled children
wonder if they should have noticed the disability earlier. Guilt may be
experienced when raising children without disabilities with disabled
children—are we giving enough attention to each child? Family or friends
may lack empathy of the demands of the care situation.
Neighbors—unfamiliar with the situation—sometimes report parents to
child protective services who they believe are not appropriately caring
for their own children.

How might parents with a
disabled child manage and support a normal family life when there are
non-disabled children in the family—is this even possible? What insights
might be helpful for parents of disabled children who feel separated or
isolated from general society because they have a child who is
different? How might others view parents and disabled children whose
behaviors may not be viewed as appropriate? What single support
contributes to the overall caregiving situation that many individuals
and most families find difficult to accept? How might caregivers survive
without compromising their own physical and mental health?

To answer these questions, I
asked my friend, Tracie, for insight into her family’s interactions over
nearly two decades in raising a daughter diagnosed with autism. To
these insights, I added my personal and professional experiences to
result in 5 tips for caregivers:

Be HONEST and realistic about
the diagnosis with yourself, your family, your child, and others. Never
be embarrassed about your family, the care situation, or the
diagnosis—there are many others in a similar situation who understand.
If others respond inappropriately their behaviors and reactions are
their responsibility—not yours. Denial is a dangerous road and is not
helpful to the care and well-being of the person with the diagnosis.

While some families may desire
privacy, hiding a family member from interaction with others under the
guise of being protective is not supportive of the individual becoming
as independent as possible over the long term. I know many individuals
who were sheltered by their parents and who struggle in their 50’s to
acquire and learn the simple skills of daily hygiene and appropriate
social interactions with others. In retrospect, attempts of parents to
shelter their children, who are now older, has resulted in greater
stress experienced by these children when parents pass away and they are
forced to face the day-to-day reality of becoming independent.

My friend, Tracie says, “It’s
okay and helpful to acknowledge the label which for our daughter is
autism. We have learned to talk about autism as if it is a common cold.
We use this to leverage Taylor’s strengths and to find a work around for
areas of personal development.”

Seek KNOWLEDGE and insight make the role of caregiving easier. Often
day-to-day responsibilities, last minute crises, and minute-to-minute
caregiving tasks take priority over time for self-education, learning,
or attending support groups that offer strategies for managing day to
day challenges. Admittedly time poverty exists—how can I or we find a
single minute to devote to something other than direct care tasks? Find
the time.

In the world of the
developmentally disabled, understanding behaviors, appropriately
responding to behaviors, and identifying the reasons or the triggers of
the behavior is imperative to self-preservation and successful family
relationships. Time spent in gaining insight and understanding of
aspects of the particular diagnosis supports a long term strategy for
caregiving and is a significant time saver to resolving situations
earlier than years down the road. Why repeat challenging situations when
knowledge is a powerful antidote?

According to Tracie, “all of
us in the family began to understand why my daughter behaved in certain
ways and how to avoid some of the behavioral outbursts. We now realize
that there are some situations that are not avoidable, and that a
meltdown will occur, but that’s okay. Once we learned to accept and
overlook some of the behaviors we were much happier or at least content.
The confidence we gained has been a key aspect to maintaining our own
positive mental health.”

As caregivers of the
developmentally disabled are able to recognize these behaviors and
traits— including the positive and negative aspects—communication and
interaction become easier due to increased understanding of the
individual. This does not mean at all that behaviors are not
challenging. Learning appropriate responses supports ease of daily
interaction and reduces the emotional stress of the caregiving
situation. Many times caregivers fail to realize that the behavior of
the caregiver is a trigger for the behavior for a child with a
developmental disability. This is insight is also relevant to caregivers
of persons with Alzheimer’s disease; many times the caregiver or the
environment causes the behavior.

Find the HUMOR. Humor and laughter are essential to caregiving
situations. There are times when it is necessary and okay to step back
and laugh—sometimes hysterically—at the repetitive questions and
behaviors, or situations that are embarrassing but humorous. I recall a
time in the bathroom of a physician’s office attempting to obtain a
urine sample from one of my clients who said with a smile, “it’s hell to
get old and need help with this type of thing.” We were laughing so
hysterically that I’m certain others outside of the bathroom were
wondering what we were doing.

Other examples: wearing
clothes that don't match or are inappropriate for the weather—but I'm
dressed so what’s the problem? There is also the challenge of
understanding the feelings of the person with the disability—this is
what my mad face looks like or I hit my arm when I’m frustrated with
you. Also existing is the challenge of the disabled person being able to
understand the feelings of others or how their words or statements
might offend others—that’s an ugly baby.

Just as with some older adults diagnosed with Alzheimer’s disease who
lack filters for appropriate conversation or social skills, the words
of the developmentally disabled are simply stated without thought of the
effect on others. Then there are the confusing conversations that arise
because many of us use figures of speech like “it’s raining cats and
dogs.” Persons with developmental disabilities have no idea how to
relate to these illogical statements.

Tracie calls these repetitive
questions and behaviors from her daughter “Taylorisms.” Her family has
come to understand and to embrace the sometimes challenging, sometimes
amusing, and sometimes totally honest expressions and behaviors of her
daughter which others may not understand or appreciate.

ACCEPT help. Know that it is
imperative to seek help from others in similar situations and then to
accept the help offered. The idea of accepting help for many caregivers
is challenging because many believe that they have to “do it all.” No
one single caregiver, regardless of the situation, can do it all without
damaging their own physical health and mental well-being.

According to Tracie, “help can
be found in the most unusual places or unexpected people. Early on I
was guilty of sheltering Taylor. In our mind's eye, we were protecting
her, but through experience in our day-to-day lives I have seen most
folks be patient, understanding, and want to make accommodations. I had
to learn to give others the opportunity to show their kindness.”

EMBRACE the caregiving journey
and learn to advocate. The role of caregiver is not easy. Tracie’s
advice, “you may lose some friends along the way but these may be few
compared to the many friends, neighbors, family members, teachers,
therapists, doctors, and strangers who are there to help.”

Never let another person tell
you “don’t bother” or “he or she is too old” or a long list of
insensitive statements that make you as a caregiver feel hopeless or
hesitant to aggressively advocate for a loved one. Over the years I
continually meet physicians with poor bedside manner who believe that a
person is undeserving of medical care, “after all he’s 95.” I meet
others lacking caregiving experience offering unsolicited advice but no
support. Until a person has walked in your shoes it is difficult to
understand your daily reality.

Gain the knowledge to be an
advocate or hire the services of an advocate. Advocacy is a learned
skill. Advocacy takes courage. Do bother to become more knowledgeable,
more honest, more accepting of help, and find joy in the humorous
situations that one might find frustrating at times. Caregiving is not
for the timid—be visible and share what you have learned with others.

Pamela D. Wilson, MS, BS/BA,
CG, CSA, Certified Senior Advisor specializes in working with family and
professional caregivers to navigate healthcare and aging
concerns. Wilson, an expert in the field of caregiving, has personally
helped thousands of family and professional caregivers since 2000 in her
career as an advocate, a care navigator, and an educator. Through her
company, The Care Navigator, she is an advocate and service provider in
the roles of guardian, power of attorney, care manager, and transition
specialist. She was producer and host of The Caring Generation®, from
2009 to 2011, an educational radio program for caregivers on 630
KHOW-AM. In addition to her work at the Care Navigator, Pamela gives
back to the community by serving as chairperson of the Community Ethics
Committee in Denver, Colorado.